Multiple Sclerosis: Taking Care of It and Living With It

by Marichel Vaught

In the previous issue (April 7) of The Bridge, we covered what multiple sclerosis is, whom it affects, the different types and the symptoms a body with the disease can experience.

Medical Therapies for Multiple Sclerosis

Proven studies still show that there is no single cause or cure for multiple sclerosis. Eightypercent of patients with multiple sclerosis are diagnosed with remitting-relapsing, which means there is a recovery time (remitting) after experiencing symptoms (relapsing). A variety of treatments and therapies are available to help prevent relapses that would cause disability. However, if a patient is in one of the progressive stages, which means there is no recovery period and disability is present, then the only treatment, right now, are those to administer relief from symptoms such as pain and bladder problems.

Currently, there are several studies and clinical trials to develop more effective treatment. According to Dr. Andrew Solomon, assistant professor of neurology and division chief of the multiple sclerosis center at the University of Vermont Medical Center in Burlington, a drug called Ocrelizumab is in trial that would be the first to help with progressive multiple sclerosis and should be available in about a year. The International Progressive Multiple Sclerosis Alliance, made up of about a dozen multiple sclerosis societies from around the world, was developed to provide research funding for treatment of the progressive forms of the disease. The Alliance reports that Ocrelizumab has been granted ‘Breakthrough Therapy designation’ by the U.S. Food and Drug Administration. This type of designation can expedite the development and review of medications.

“Matching the patient with the most effective therapy for them is a challenge … Our goal is to administer not only the most effective treatment but also the safest,” said Solomon. Right now, there are 13 medications that work to prevent relapses and new inflammation. Depending on the drug, the medication can be administered through an injection or orally. “There was a lot of excitement with the oral pills,” said Solomon. But last year, more risks were found with taking oral therapies. In the future, he hopes to see better biomarkers to determine which treatment would best complement the patient, taking into account the severity of the disease and how long they’ve had it.

Solomon says he supports patients who choose to seek complementary alternative treatments. He ultimately likes to steer patients towards what makes them feel better and what is most cost-effective for them. Solomon has seen the success acupuncture and medical marijuana have had in relieving pain while change of diet has given other patients more energy.

“There is overwhelming evidence that this is an autoimmune disease with 150 genes that influence the risk,” said Solomon. He explains that two people can have the same genes but only one of them has multiple sclerosis, which means that something in the environment triggers the immune system to fail. But again, studies show, there is not one single cause of the disease and no cure.

Dr. Solomon feels that overall, patients are doing better because they are being diagnosed and treated earlier.

The MS Center at the University of Vermont is involved in a lot of active research in collaboration with National Institutes of Health, Mayo Clinic, Oregon Health and Science University and Washington University. Such studies include better and new MRI techniques in detecting multiple sclerosis and improving balance and gait in patients. A larger study is looking at the standards of care for patients with multiple sclerosis.

The MS Center itself is growing. Dr. Solomon will be joined by another specialist in September from the Mayo Clinic. The center also has a urologist and nurse practitioners that specialize in multiple sclerosis. The center currently sees up to 1,500 patients from Vermont and upstate New York. They collaborate with Sue Kasser at the Human Motions Lab at the University of Vermont to learn about beneficial exercises for balance in patients.

Meet Julie Sancibrian

Julie Sancibrian.Photo by Karen Pike.

A tingling in the legs that was more annoying than painful was what got Julie Sancibrian to visit a doctor 20 years ago. According to Sancibrian, her doctor said it was an easy diagnosis because all the tests and her symptoms clearly revealed the problem. She had multiple sclerosis. After one year, Sancibrian became a candidate for a clinical trial of chemotherapy treatment at Brigham and Women’s Hospital in Boston. The treatment worked well but it couldn’t go on forever. Eventually, Sancibrian transitioned into secondary-progressive multiple sclerosis. At that time and still to this day there are no courses of treatment to lessen relapses for patients with secondary-progressive multiple sclerosis.

Today, Sancibrian is numb from the waist down. She has little bladder control, fatigues easily and is experiencing hearing loss. She describes her balance as “horrible.” She has endured several injuries due to the imbalance such as cracked ribs, a broken shoulder and numerous bruises. Sancibrian either uses two canes or a wheelchair for mobility. But despite her disability, she is fiercely independent. “Emotionally, it took a lot but it’s not me to dwell,” said Sancibrian.

Sancibrian was lucky to be surrounded by supportive family, friends and colleagues. At around the time she was diagnosed, she started working at Blue Cross Blue Shield of Vermont in Berlin, where she is still employed. Many of her co-workers were in the medical profession and understood, even better than Sancibrian, what she needed and what to expect.

Sancibrian has learned to cope with the disease. “I’ve learned to be comfortable with what I can do. I’ve had to learn new ways of doing things, to adapt. I run a lot of my errands, like grocery shopping, at night when I have more energy. If I did it in the morning, I’d be exhausted the rest of the day … I do things for myself as much as I can.”

In October of 1996, Sancibrian saw a flyer for Walk MS in Montpelier for the following spring and ended up putting together the largest team the Montpelier walk had seen. She was later asked to coordinate the Montpelier walk and did so for the next few years. Twenty years later, Sancibrian still volunteers at the MS Walk but at the registration table rather than as a walk participant. She also is on the committee for the author’s luncheon hosted annually by the Greater New England Chapter of the National Multiple Sclerosis Society.

More effective therapies and a treatment for the progressive forms of multiple sclerosis, such as Ocrelizumab could be a life-changer for Sancibrian and the 2.3 million people with multiple sclerosis. As studies and research advance our understanding of the disease, we can hopefully be closer to a cure as well.

The Bridge is proud to be a media sponsor of Walk MS 2016 in Montpelier. If you are interested in participating in the walk or making a donation, visit walkms.org and enter 05602 in the “Find a Walk” section. People are also welcome to join The Bridge’s own walking team, The Bridge Beat. Register for that particular team at http://main.nationalmssociety.org/goto/bridgebeat.